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Posts Tagged ‘Sexuality’

My Muscles, My Disease: The Pitfalls of a Meth Addict

Wednesday, June 15th, 2016

There is a folder, tucked within a folder, buried deep in my computer files. I shouldn’t be looking at its contents, yet I can’t bring myself to delete it altogether. It is labeled MARCUS, and inside the folder is my disease.

During my years of crystal meth addiction I went by the name of Marcus, at least to dealers and tricks and fellow addicts. It helped me determine who was calling my cell phone — those calling for Mark or Marcus usually had very different agendas — and Marcus even became an alternate persona as my drug addiction progressed.

When partying as Marcus, I felt confident and aloof. I took awful chances. I never met a strobe light I didn’t like or a box on a dance floor I wouldn’t jump on. A steroid-crazed gym regimen and the dehydration of drug abuse transformed my body into the low fat, pumped up gay ideal. My body was my currency, traded for sex and drugs.

Pool-ColoredPhotographs of that body, in full, preening strut, are the contents of the MARCUS folder. The pictures were my calling card for drug-fueled pursuits. They suggest nudity but are cropped modestly — although God knows that much more damning images of me surely exist in the dark corners of cyberspace.

In one of the few pictures showing my face, I stand under a running shower — a pitiful Playgirl pose, spray nozzle in hand — with a blank, wet face and shipwrecked eyes. The only emotion on display, just around the edges, is a dull fear.

My life was precisely as pictured. It wouldn’t be long before my drug use trumped my gym schedule, and my status in online chat rooms devolved from intriguing hottie to that crazy mess that doesn’t look like his pictures.

Since then, my recovery from drug addiction has helped me understand that the Gay Strut is key to my disease. It is a sly porthole back to raging insanity.

Explaining all this feels idiotic. What vanity I possess, asking you to gaze upon my former, overwrought beauty as I complain about the consequences. It feels like an invitation to tell me how much healthier I look now, or that recovery is “an inside job.” I know this. I’m just sharing the curious road that got me here.

My recovery depends on healing my mind, body and spirit. At the moment I’m two out of three, even after several years of clean living.

My spirit is happy. My smiles are joyful and plentiful. My mind is clear, although I don’t kid myself, there are remnants of a brain pickled in methamphetamine for many years. But healing is underway, and my mind and spirit are enjoying the process.

Only my body lags behind, injured, resentful, and suspicious of the path to well being. I’m sedentary and stubborn. I relate being physically fit with something traumatic that once hounded and eventually ruined me.

I want to be healthier, and to control my weight and rising cholesterol. I need to fix this, I tell myself, but I’m afraid to fix this. There’s the potential that I’ll go back to a lifestyle more horrible than my expanding waistline.

It’s good to get in shape again, I tell myself with sincere intentions. The treadmill is really taking off the pounds and I should start weight lifting again and hot damn, that muscle recall really works just look at my arms and I should buy new tank tops and work out even harder and get steroids prescribed again and what’s wrong with hanging out at a bar shirtless and shooting pool and sure I’ll do one hit of that, thanks, and man I would look damn hot at a sex party right now and who’s your dealer and do you have needles…?

Getting back in shape is an easy call. Except my mind puts physical fitness on the same crazy train as my drug addiction. The fact I acknowledge my insanity is a good start. Now I can begin the process of teaching my body new tricks. When I’m working out, I try to remain in a state of gratitude for my life, for my physical self, and for the fact I no longer have to live as I once did, using my body as currency.

There are traps on the road to recovery, as anyone getting clean and sober will tell you. The vigilance it requires is a full time job. A dangerous choice might look perfectly innocent. It might be a reasonable part of life. It could even be a healthy choice, at least for you.

That’s the cunning nature of drug addiction. My very reckoning can look as pretty as a picture.

Mark

(The photos above are the only Marcus images that remain, gratefully. This re-post is inspired by my friend Will Armstrong, whom I recently profiled about his addiction and body image. Please note: I always speak generically about my recovery from addiction, and do not publicly promote one model or another. The point is, help is available for the asking.)

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Posted in Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, Prevention and Policy | No Comments »

My Response to Orlando in One Sublime Performance

Monday, June 13th, 2016

pulse-orlando-shooting-lgbt-community-v3

I can’t watch the news anymore right now. I have it muted, but will admit to glancing in its direction every few minutes. On the screen there are police cars and flashing lights and footage of the injured and there is often someone in tears.

It makes me wince with emotion, and twice this morning I have blurted out a sob for a moment, which surprises me, frankly, because I don’t cry much anymore.

Tears are creeping up on us everywhere. My husband started crying yesterday while we were waiting for a table at a restaurant. He read on his phone about the long lines to donate blood, hundreds of people waiting for hours, and he lost it for a minute. I rubbed his back and said nothing.

No words, as they say.


 
But, being a theatrical queen that returns to performances for emotional touchstones, I want to share this transcendent performance by Fantasia from the 61st Annual Tony Awards. Every single word of this song, “I’m Here” from The Color Purple, speaks to me at this moment and to this tragedy.

We are resilient. We miss those close to us. We are beautiful. And we are here.

“I’m Here.”

I got my children.
I can’t hold them now,
They may not be here, but they still mine.
I hope they know I still love them.

Got my house.
It still keeps the cold out.
Got my chair
When my body can’t hold out.
Got my hands
Doin’ good like they s’pose to,
Showin’ my heart
To the folks that I’m close to.

Got my eyes.
Though they don’t see as far now,
They see more ’bout how things
Really are now . . .

I’m gonna take a deep breath.
Gonna hold my head up.
Gonna put my shoulders back,

And look you straight in the eye.
I’m gonna flirt with somebody
When they walk by.
I’m gonna sing out . . .
Sing out!

I believe I have inside of me
Everything that I need to live a bountiful life.
With all the love alive in me
I’ll stand as tall as the tallest tree.

And I’m
Thankful for each day that I’m given,
Both the easy and hard ones I’m livin’.

But most of all
I’m thankful for
Loving who I really am.

I’m beautiful.
Yes, I’m beautiful,
And I’m here.

 

And please, my dear friends, be well.

Mark

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Posted in Family and Friends, Gay Life, My Fabulous Disease, News | 1 Comment »

There’s More Room in a Broken Heart

Tuesday, June 7th, 2016

Bill Jacuzzi Crop

Will Armstrong (here, in a 2015 photo) acknowledges his losses but has never been happier.

So don’t mind if I fall apart
There’s more room in a broken heart.

— Carly Simon, “Coming Around Again”

When Will Armstrong emerges from heart surgery in just a few days, he will have weeks of hospitalization ahead. He will also have expensive new hardware in his chest and a devoted animal waiting anxiously at home.

What he will not have is a pulse.

Will, a 44-year-old living in Atlanta, is having a Left Ventricular Assist Device (LVAD) implanted, and it will push the blood flow through his heart so smoothly that the throb of a pulse will be virtually nonexistent. Unlike a pacemaker, the LVAD needs electricity to function, provided by a battery pack to be carried by Will at all times. With an extra battery always on hand. And a couple more charging at home.

The last year may have been devastating for Will, but the process has had an unexpected effect on his emotional state.

“I’m happier than I was before I got sick,” Will says now. Allowing himself to receive the love and support of his wide circle of friends has had an enormous impact. “A lot of people will never know that kind of love while they are alive,” Will says. “To be able to know that is an incredible gift.”

The bearded weight-lifter has always cut an imposing figure, and he admits he used his physicality as armor while navigating life as a gay man. “I had to project this image,” Will says. “It was such a fraud.” His intimidating posture kept people at a distance, even as he struggled with life events that called out desperately for support.

Will tested HIV positive twenty years ago. Coming to terms with the stigma attached to the virus is something he managed to resolve some time ago, until he found himself facing another disease that posed a more immediate threat: crystal meth addiction.

The LVAD device Will is having installed.

The LVAD device to be installed.

Once he began a recovery program for meth addicts, populated largely by other gay men, Will was surprised to learn how many of his fellow addicts were also HIV positive but uncomfortable saying so. “That surprised me,” he says, “that people could feel stigmatized for their HIV, even among other gay people in recovery.” Will responded by becoming one of the founders of Pozitively Fabulous, an annual retreat weekend for people in recovery living with HIV, now in its fifth year.

As his years of successful recovery passed, however, Will continued to hold tight to his ultra-masculine persona. His social media pages were littered with gym selfies and bicep measurements. It was an unhealthy fixation on self, Will now admits, and it eventually caught up with him.

In May of 2015, after seven years of clean living, Will relapsed on meth for two full weeks.

“I ended up in the emergency room,” he says. “I thought I was having panic attacks, but I was in kidney failure. I was in total disbelief when they diagnosed my heart failure. I’ve never even had high blood pressure.”

“It could have been anything, HIV, diet pills, steroids, crystal meth, genetics,” Will says. But he knows that, when it comes to addiction, the most obvious answer is usually the right one. “People will sometimes say how ironic it is that I ‘escaped drug addiction’ and then this happened. No. I didn’t escape drug addiction. This is what happened.”

What has followed is a year of medical trial and error, as doctors tried to keep Will’s heart viable while exploring alternatives. He has been denied a heart transplant due to HIV, and his doctors say there are no heart transplants happening in the United States for people with HIV, anyway (the very few organ transplants that are happening, such as liver transplants, are between HIV positive patients and donors).

“I went through a couple months where I didn’t want to live anymore, I was suicidal,” Will says. “I didn’t want to be here anymore.”

12705682_10206402496396600_3613115278995185772_nAnd this is where Addie comes in, the “creature more spiritual than anything in my life,” says Will.

Addie is the pit bull that is glued to Will’s side, constantly vigilant for a hug from him or signs of a treat or a walk. “Addie is the reason I’m still here. I live alone, I’m single, I didn’t have a boyfriend or the fabulous life I thought I would have. But Addie forced me to get up every day and take her out. She’s the reason I stuck around.”

“When I met her at the dog rescue two years ago, they told me she was hard to adopt because she was high strung and not great around kids or dogs.” Being a pit bull probably didn’t help her chances, either.

It was a match made in shelter heaven. Both Will and Addie might have been outwardly intimidating to others, but what they really needed was some unconditional love. “I connected with her and fell in love,” said Will. “When I’m with her, I try to be as happy as she is. She is always right here in the moment, and she believes everything will be okay. She adores me. I’ve never had this type of relationship with anything.”

11149275_10204571033371169_7121808734332170427_nWill has a team of friends at the ready as he mentally prepares for the five-hour LVAD surgery in a few days, but he wants them to be focused on Addie, who will miss him terribly. “She is too big and hyper to sneak into the hospital to see me,” Will said, “but I’ll be doing video calls with her.”

Will has watched YouTube videos of the surgery (“gruesome stuff”) and knows the risks of complications. He understands the LVAD will probably be attached to him for the rest of his life (“batteries are important, but I can plug myself in anywhere, including the car”). Whatever anxiety Will may be experiencing is blanketed by a deep sense of gratitude.

“Today, I look at situations that really should aggravate me, and I’m just not there. All that shit I thought you should think about me doesn’t matter. Things like money and romance aren’t important to me now, or being super macho so people don’t think I have feelings. What is important to me are things I already have.”

“My biggest challenges have been readjusting my expectations,” Will adds. “Sure, I have a lot of uncertainty in my life, but I’ve got so much love the last year from my friends and family. And you know what? I allow people to love me. They want to be helpful, and the biggest thing I can do for them is let them love me.”

As Will considers his close brush with mortality this year and the recovery process ahead, he sounds like a man who is comfortable, at long last, in his own skin.

“I’m grateful I have been given a year to resolve things, let things go, take care of things,” Will says. “If I were to leave this planet, I would be okay with that. I’m okay if it’s my time.” His affairs are in order, including a new home for his beloved Addie, just in case.

“All that said,” Will offers finally, “I don’t want to go.”

Mark

(Will Armstrong’s friends have created a GoFundMe page to help him with basic living expenses during this time. Will has been forced to close his computer consulting business as well as the fledgling but enormously popular Burly Bakers, the bakery of his lifelong dreams.)

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Posted in Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News | 1 Comment »

Reclaiming ‘Our Golden Years’ as People with HIV

Monday, June 6th, 2016

Atlantan Jesse Peel, at 76, is one of those featured in Positively Aware's special issue, "Our Golden Years."

Atlantan Jesse Peel, at 76, is one of those featured in Positively Aware’s special issue, “Our Golden Years.” Photo: Charles Green

My friend Olivia G. Ford (she got that whole middle initial thing from me, I’m convinced of it) speaks even faster than I do. That’s a rare distinction.

Olivia is also an editor. She was my editor during her years at TheBody.com. I am afraid of editors. They know too much. They might even know I’m not the writer people think I am. Not on the first draft, anyway.

Mark Olivia Photo cropA few months ago, Olivia invited me to join her as the guest editors of a special issue of Positively Aware magazine and the result, “Our Golden Years,” explores aging and HIV from the viewpoint of people who are already post-retirement age. (Check out the link to read a digital version, or find a copy at your local HIV clinic or pharmacy.)

In our initial conversations about how to approach the topic of HIV and aging – and let’s face it, we’ve all been seeing it in HIV media a lot in recent years – we hit upon the fact that, while there are so many people post-retirement age who are living with HIV, most stories on HIV and aging tend to focus on “the AIDS generation” preparing to age, rather than those who are already experiencing their advanced years right now.

From our editor’s letter in the issue:

We believe that the story of aging and HIV must include people who were in their 30s and beyond when the epidemic began, as well as the newly diagnosed who are already over 50 (who now account for roughly 1 in 6 new HIV cases). Those who have surpassed retirement age have been largely absent from the conversation and media coverage of HIV/AIDS.

The more we considered this, the more we became committed to sharing the stories and lived experience of elder people with HIV for this issue, “Our Golden Years.”

The idea of featuring the lived experience of older people with HIV got us excited, and led to some terrific pieces on mental health (written by two therapists and longtime survivors), a conversation between generations of black gay men, women with HIV post-menopause, how to address the needs of transgender women as they age, and a frank and revealing piece on sex and dating in later years.

PA-Summer-2016-cover-(1200x1575px)

We were really fortunate to have such talented HIV writers and advocates join us for this issue, including David Duran, Kenyon Farrow, Sharon Lee, Rae Lewis-Thornton, Kellee Terrell, David Alain Wohl, and David Fawcett. The issue was overseen by the dynamic duo from Positively Aware, editor Jeff Berry and creative director Rick Guasco.

More from our editor’s letter:

So many cultures throughout human civilization have bestowed great honor and value upon their most senior members. We believe it is inherent upon us all, as people who care deeply about a health crisis that impacts us socially as much as medically, to do the same.

Welcome to our golden years.

Being a part of this collaboration with Olivia was truly a delight, and while it may have demystified the role of an editor for me – I’ve never done this before – it absolutely increased my respect for Olivia and her talents, and for all those people out there who are conceiving and shaping HIV publications and web sites on a monthly basis.

So, while I’m at it, a shout-out to the late, great Bonnie Goldman, the founding editor of TheBody.com, where My Fabulous Disease was born. And to JD Davids, the scary smart editor there now.  And then there is the sly and brilliant Oriol Gutierrez at POZ Magazine (with the amazing Jennifer Morton, their very own wonder woman), the lovely Bob Leahy at PositiveLite in Canada, and the nurturing and insightful talents of Diane Anderson-Minshall at PLUS Magazine. And Chris Bull at Queerty has been a real advocate for informative and challenging HIV content on their site. Editors, editors everywhere!

But don’t get me wrong. I’m still afraid of them.

Mark

p.s. Check out the digital issue of Positively Aware, look for it at your local clinic or pharmacy, or get your own subscription to the print edition right here.

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Posted in Living with HIV/AIDS, My Fabulous Disease, News | 1 Comment »

Surviving Life Itself: Reflections of a Longtime Survivor

Sunday, June 5th, 2016

surviving life artwork

The young woman sitting across from me on the bus is in her mid-20s. She turns to her companion and her voice grows serious.

“I know someone who died,” she says in the hushed tone reserved for tales of mortality. Her friend looks up from his phone. “He was a good friend of my brother,” she goes on. “He was killed in a motorcycle accident a few months ago. It was just awful.” As her friend offers words of comfort, my own thoughts produce a rueful smile and a nagging question.

Just one? You know just one person who died?

By the time I was her age, death in my social circle was so commonplace the body count approached the toll of a commercial airline tragedy.

I listen as the woman reverently shares the details of the accident, of the shock waves that surged through the family, of what the dead friend was like and who freaked out at his funeral. And then a bittersweet realization strikes me.

The friend she lost has a story of his very own. It is the chronicle of one tragic death, with all of its intimate details and reverberations. His story will be repeated by the young woman for years, and by her brother and by the remaining loved ones of the absent friend. And they will grieve and remember this individual death and grant it the weight of a rare tragedy.

***
I didn’t get many chances to do that, living as a young gay man in Los Angeles in the 1980s. There were very few singular deaths. It seemed like everyone was doing it. And among them, a dozen friends close to me, struck down within months of one another, with whom I shared a history of youthful secrets, joys and indiscretions, never to be spoken between us again.

Already I have indulged in a regrettable pastime that aggravates me when others pander to it. I am counting my lost friends like selfishly guarded chips in a morbid poker game, claiming my grief as if the high tally amplifies the legitimacy of my loss. There is no hierarchy of misery. The death of one person close to you is quite enough.

And yet there are harrowing, undeniable moments from my past, drawn from 30 years living with HIV, that have shaped my attitudes and the senseless tragedies that befall us. I can conjure them but I must do it deliberately, for they are held captive in secluded corners of my mind and I release them with great caution. Perhaps now is the right time to unlock a few of those images.

The fluids in Lesley’s dying body percolating like a coffee maker as we stood at his bedside awaiting his last breath. The anguished admission by my brother, Richard, that he helped his critically ill lover swallow a deadly, Seconal-laced cocktail in order for him to die on his own terms and avoid the final indignities of AIDS. My visit to Pablo in intensive care during his pitiful throes of dementia, nodding my head reassuringly as I tried to decipher his final, incoherent pleas.

They are a litany of despair, these heartrending tales, but I feel compelled to reveal them as part of another common exercise: to authenticate my history as a “long-term survivor.” I have misgivings about that unsettling designation because it doesn’t speak to my other, parallel life experiences and it suggests a dismissal of my relevance in the here and now.

***
In the decades since those sorrowful days, I have faced a host of perilous circumstances apart from AIDS, including a car crash, drug addiction, serious medical procedures and weapons pointed in my direction. Like everyone else, positive and negative alike, I am a survivor of life itself.

That life has included falling in love, changing careers, teasing my friends, watching my cats wrestle one another, and looking forward to whatever lies ahead with a deep sense of gratitude and joyful anticipation.

And it is this prism—one that includes AIDS as only a segment of my life—through which I view the world today. My status as a long-term HIV survivor does not make me a champion or a museum piece to be examined and admired. I am a man in the prime of his life. My age and maturity guide me, not the virus that has failed miserably to kill me.

The grief-stricken young man I once was held no clue about the mystifying speed with which time passes. The swift interval between the early days of AIDS and merciful treatment breakthroughs confounds me even now. Suddenly I blinked, and when I opened my eyes I was 40 years old and the world was a far different place.

***
Many of us remember that new world, when people with AIDS were saved by a miraculous “cocktail” of new medications. Living with HIV before the mid-1990s, when these medications were introduced, has become the popular line of demarcation for entry into the fellowship of long-term survivors.

My work in HIV advocacy continued during this time while others retreated to lives away from daily reminders of the epidemic. I did not fault them for that, in fact I envied them, but the army of our earliest activists, forged in the first years of the plague, had diminished.

By then, women and people of color had gained more traction and acknowledgment in the HIV arena, though without the national fervor or the generous support enjoyed by the original, largely gay agencies.

It was a time of such hope and encouraging progress, but if you scratched the surface of these victories you found they were dependent on privilege, money and access. Deaths continued unabated behind a dark curtain of racism and poverty.

The gay community began to avert its eyes from the continued infections of people unlike ourselves, and I joined many other exhausted activists who abandoned town hall forums devoted to HIV for the celebratory relief of the dance floor. Massive circuit party events became a vibrant diversion, summoning revelers by promoting their dubious contributions to AIDS service organizations. After a generation of relentless mortality I felt entitled to the party, to the steroids and the gym membership and the body-thumping beats of house music.

That is, until the festivities morphed into drug-fueled bacchanalias that required ambulances with the same regularity that had once been needed at AIDS hospices. I fell victim to their excesses, and my drug addiction and recovery process removed me from HIV advocacy for the next several years.

***
I blinked again and now find myself here, sitting in my home office as a man in his 50s. My workspace is populated with relics of the epidemic, the walls filled with posters from AIDS Walks and photos of protests and triumphant arrests. A vast collection of name badges from AIDS conferences are strung from a single hook in an enormous, colorful bouquet. And everywhere around me are reminders of the missing. Pictures of friends whose faces will not age. Borrowed sweaters in the closet that need never be returned.

They comfort me, these tangible reminders of strife, victory, love and loss. They help me embrace and appreciate my life history. Perhaps I don’t find the title of “long-term survivor” so unsettling after all. There are worse things.

Most of all, the trauma that had once consumed me is now shrouded in the fog of a fading dream.

What remains are the wondrous developments of the present, like treatments that have also rendered people with HIV non-infectious and the amazing potential of pre-exposure prophylaxis (PrEP), a pill to prevent someone from contracting the virus. The advent of PrEP is the most significant prevention advancement in a generation. It is just the kind of miracle we once prayed for as we sat silently in pews at memorial services.

But astoundingly, these developments have been nearly as controversial as they have been celebrated.

There are thoughtful conversations about the cultural and medical effects of PrEP. What a shame they are being drowned out by clanging arguments about who is using condoms and who is not. The ludicrous chatter about who is a whore, a role model or a rebel foolishly reduces human sexual behavior to a problem that must be solved. Much of it seeks to impose sexual sterility in the way homophobic conservatives once denounced all gay bedroom antics, whether they were risky or not.

I remember what sex was like before gay men started using condoms. It was glorious. It still is. I always thought that finding our way back to enjoying sex without a barrier was kind of the point. Even the popular slang for sex without condoms, “barebacking,” evokes some kind of deviant sexual pathology. The entire history of human sexuality would suggest otherwise.

I watch the absurd finger-pointing today, the naïve segregation of positive and negative, the lack of empathy granted to human failings, the tendency of the newly infected to call the police before they call a doctor, the fracturing of the advocacy efforts built over decades, and I weep for the community we once were.

***
Our hand-wringing over how to engage young people bemuses me, particularly our morbid fascination with aggressively foisting upon them the horrors we once endured, as if clubbing them with fear will somehow make them rethink their youthful transgressions. Our heartbreaking past is important history that should be preserved. It is not a prevention strategy.

Trying to imprint our life lessons on the young is a fool’s errand practiced without effect for millennia. I have never walked up to anyone who served in Vietnam and asked him to sit down and tell me all about it. I may respect the elderly soldiers in Veterans Day parades, but whatever post-traumatic disorders or multiple losses we may share fail to unite us. I watch them roll by in wheelchairs, festooned with medals and shriveled into nothingness, and then I have the audacity to wonder why younger gay men don’t consider my life experiences relevant.

Our influence as long-term survivors may be limited, but we can find meaning and engagement as cultural elders and mentors. To whatever degree younger people are receptive, we have so much to offer about the nuances of treatment, the various side effects and the failings of the pharmaceutical complex that we have rallied against so effectively through the years.

Regardless, nothing should deter us from being of service to one another. We must support the emerging networks of other survivors and work to find solace in our shared history. We are a displaced segment of a community that once ministered to us. Our bond is vital to finding solutions to the issues we face as an aging population.

As wearying as our battles have been, as unwelcome as we may sometimes feel in the modern advocacy movement, we have plenty to contribute. We had better do it while we still can.

I am sensitive to the passage of time because I have seen lives with great promise left unfulfilled. I may no longer fear dying, but I am sorely afraid of not taking full advantage of these precious additional years that were once unimaginable. Regrets, the things unsaid and undone, are what frighten me and urge me onward.

The mysteries of life and time will be revealed in due course: to the woman on the bus grieving her singular loss, to those who would howl at the moon over behaviors they do not understand, to survivors grappling with the meaning of tragedy, to young people negotiating the sexual terrain, to you and to me and to all the rest.

Enlightenment awaits. All we have to do is blink.

Mark

(This essay appeared in the June, 2015 issue of POZ Magazine and is shared with their permission. Today is HIV Long-Term Survivor Awareness Day.)

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Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | No Comments »

Checking Privilege at ‘HIV Is Not A Crime’ 2016

Thursday, June 2nd, 2016

Marco Castro-Bojorquez (Lambda Legal), Maxx Boykin (HIV Prevention Justice Alliance), and Naina Khanna (Positive Women's Network) at HIV Is Not A Crime (II) Training Academy held May 17-20 in Huntsville, AL.

Marco Castro-Bojorquez (Lambda Legal), Maxx Boykin (HIV Prevention Justice Alliance), and Naina Khanna (Positive Women’s Network) at HIV Is Not A Crime (II) Training Academy held May 17-20 in Huntsville, AL.

The issues of race, gender and privilege crackled through the recent HIV Is Not A Crime (II) conference like a live wire, throwing sparks at every turn. From the main stage to the hallways, attendees called out white classism, the utter failure of the criminal justice system (unless its purpose is solely to imprison black men), and what it truly means to be an ally of marginalized communities.

It was at turns exhilarating and a little unnerving. White male advocates like myself might have lost our bearings from time to time, wondering why we felt self-conscious at a conference devoted to an issue we care deeply about. No matter. The anti-criminalization movement is largely populated by women and people of color, and their job isn’t to make me comfortable (activism rarely is). Changing laws that imprison innocent people living with HIV is the goal, along with condemning the social and legal systems responsible.

HIV advocacy has always been driven by those with the most to lose. An argument could be made that gay white men, now decades after the plague years, have increasingly exited the activism scene and are off somewhere getting gay married and enjoying access to HIV treatment and PrEP. Left behind to do the heavy lifting are women and people of color. They have been core advocates in the fight all along, of course, but have had to watch as other populations got what they came for and then peeled away.

If you go with that thesis, then the prominence of women and people of color at HIV Is Not A Crime is as bittersweet as it is triumphant.

Produced by The Sero Project and the activism powerhouse Positive Women’s Network USA, the conference served as a “training academy” for advocates working to reform or repeal State-wide HIV criminalization statutes, and the work of organizers is a testament to our common bond: the empowerment of people living with HIV, speaking about ourselves, for ourselves.

The intersections of race, gender, and sexuality were given as much weight as strategy sessions on working with legislators and lawyers, and the program repeatedly drove home the fact that criminalizing behaviors related to specific groups of people is as American as apple pie. Plenary speakers included advocates for women (including transgender women), current and former sex workers, immigration reform and drug legalization advocates, and, most powerfully, people who have been prosecuted under HIV criminalization statutes.

My video coverage of the HIV Is Not A Crime (II) Training Academy provides a glimpse of demographic landscape the conference offered, even if I managed to chronicle remarks by elevated HIV advocate Mary Fisher while not capturing enough of the electrifying words of grassroots activists like Maxx BoykinAshton P. Woods, and Marco Castro-Bojorquez, or criminalization survivors like Ken Pinkela and Monique Moree (add them to your Twitter feed anyway). My special thanks to Nicholas Feustel, a Berlin filmmaker who is creating his own film about the conference, for allowing me to tag along during his interviews (and take advantage of his awesome lighting).

It is tough to describe the experience of being on the campus of University of Alabama in Huntsville with these fierce advocates for four days, living together in dorms and taking our meals in the cafeteria. HIV Is Not A Crime may be the most perk-free conference any of us have ever experienced, with no exhibit hall or pharmaceutical sponsors bearing swag bags, and I don’t believe we would have it any other way.

Group photo

For more information on HIV criminalization, and why this continues to be the defining moral HIV issue of our time, I urge you to visit The Sero Project for video interviews with those who have been prosecuted and a state-by-state map of HIV statutes.

Meanwhile, my friends, please be well.

Mark

AIDS2016_logo_website_white_bg_3p.s. Speaking of conference coverage, I’m thrilled to announce that I will return to the International AIDS Conference for AIDS2016 in Durban, South Africa in July. My video blog coverage is sponsored by MSMGF and will appear on their site as well as TheBody.com. I look forward to bringing you the sights, sounds, breaking news, and most especially the people that make the bi-annual conference so memorable. Look for more details very soon.

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The Nearly Naked AIDS Advocate

Sunday, May 22nd, 2016

Josh Green and cast, from Broadway Bares 2015 (credit: Benjamin Ryan)

Josh Green and cast, from Broadway Bares 2015 (credit: Benjamin Ryan)

When Benjamin “Ben” Ryan began taking dance classes ten years ago, the personal venture was a complete whim. After all, he was in his late twenties at the time – ancient for a beginning dancer – and by his own admission, was “just awful” for the first few years of classes. And nothing about his vocation as a writer specializing in the science of HIV suggested that Gene Kelly was trapped inside.

Cue the victorious final production number of your favorite musical. Not only did Ben get better – a whole lot better – he was cast in the spectacular HIV fundraiser Broadway Bares seven years ago and each year since, hoofing alongside actual Broadway dancers. Performers can also raise money through the event’s “Stripathon” page, through which Ben has raised more than $80,000 for beneficiary Broadway Cares/Equity Fights AIDS (you can visit Ben’s stripathon page here and add to that impressive tally).

Oh, and Ben Ryan has done all of this while wearing very, very little on stage.

When the curtain rises for “On Demand,” the newest Broadway Bares show to be performed in New York City on June 19th, Ben will be back, appearing for a third time in the opening number. With its generous blend of almost-and-sometimes-totally-naked men and women, celebrity cameos, and risqué burlesque, the show is sure to add significant funds to the $14 million the event has raised to date for people living with HIV and other health initiatives. For Ben, it’s all an unlikely dream come true.

“For the last 15 years,” Ben said, “I’ve written about the HIV epidemic as a reporter.” He currently covers science as editor-at-large for POZ Magazine, and getting his facts straight is incredibly important to him — especially when every detail of each new study is parsed and debated online. “The way I make sure my back is covered is I fact check like crazy,” he said. “Even one word can change the meaning of something. If I do get something wrong, I’m really upset. I’m a perfectionist.”

Those same qualities have served him well as a late-blooming dancer. When he started out, “I was at the rock bottom of my dance class with a bunch of kids,” Ben said. “Even my teacher made fun of me. Until she didn’t.” He still finds it hard to believe he now shares the stage every year with Broadway professionals.

But what must the scene be like backstage, with all that naked flesh running around? “Most of the guys in the show are really friendly,” Ben said coyly. (For more visual information on the scene backstage, check out Ben’s own photography page for images of all the action behind the curtain. You’re welcome.)

IMG_1385

Ben Ryan and Laverne Cox backstage during Broadway Bares 2015.

Ben has nothing but love for special guest performers like Laverne Cox and Judith Light. “The whole room exploded at rehearsal last year when they announced that Laverne would perform,” he said. “She was such a darling, always hanging out with everyone. And Judith will just wander around backstage with this amazing grin on her face. She gives a speech at the end of the show that always gives me goosebumps.”

Star power is great, but nothing beats a volunteer like Ben who knows how to raise money. “Ben is not content to take the stage in bare-bottomed pride,” said Tom Viola, the highly regarded director of Broadway Cares/Equity Fights AIDS. “He raised $17,346 just last year and was named Mr. Stripathon.” Tom also credits Ben with helping to craft HIV prevention and treatment messages that are shared with the entire company each year, “so everyone associated with the production understands how to take care of themselves and each other.”

Ben Ryan is named Mr. Stripathon at Broadways Bares 2015

Ben Ryan is named Mr. Stripathon at Broadways Bares 2015

Amidst all the revealing fun, Ben knows Broadway Bares isn’t simply being titillating for its own sake. “Ultimately, the show is a celebration of the body,” he said. “We harken back to a time when we were afraid to touch each other, so to celebrate our sexuality is a profound thing. That, as opposed to HIV stigma and anxiety about sex and transmitting disease.”

Ben also admits that the show is a nice escape from his more cerebral work in HIV science. “It’s so much fun to be silly and outrageous,” he said. “I wanted to be involved in an event that I thought was the most exciting thing in New York City. And I am!”

Mark

(Ben’s fund raising page for Broadway Bares is here.)

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Into the Desert, After the Bomb

Thursday, May 12th, 2016

DM Doc 3 Still

Daniel Cardone’s essential but relentlessly grim documentary about longtime AIDS survivors, Desert Migration, is fascinated with the bodies of the gay men it profiles.

The film begins with lingering shots of each of the subjects as they begin their day.  It follows them through their routine, some of them naked, as they prepare breakfast, shower, shave, meditate. Their faces peer directly at us — a few of them handsome, all of them weathered — in high definition close-up.

We are being asked to study them closely.  Look at the skin, the camera is saying, the muscles, the sags, the piercings, the facial wasting, the extended stomachs, the disfigurement, the open wounds. Desert Migration does not want us to turn away from what the gay plague of 30 years ago has wrought in the here and now.

It’s an almost clinical look at the after-effects of a catastrophe, like the documentaries that examine Hiroshima survivors decades after the bomb.

Desert Migration documents the results of a specific pilgrimage that became popular among gay men who were dying of AIDS decades ago: relocating to Palm Springs from major cities in the west, Los Angeles in particular. Once there, their fates and often their fortunes were reversed with the arrival of new medications in the mid 1990s. They experienced the emotional whiplash of renewed health in a world they had settled on leaving, as well as the unexpected financial burden of an extended lifespan.

The film is a crucial addition to the AIDS artistic catalogue because gay community is only now beginning to process and devote resources, artistic and otherwise, to the long term effects of the early AIDS crisis and the walking wounded who survived. That said, director Cordone doesn’t make it easy for us.

There is an unyielding melancholy that permeates the film.  The men profiled are almost uniformly isolated or at least wistful. The languid pace of the storytelling is underscored by Gil Talmi’s ethereal original music, a slow pulse of electronica, like a dry desert breeze.

The men all speak of searching for purpose in the desert after having resigned to die there. They come from various levels of money and privilege, including some who outlived their bank accounts, and they are not without the sociological trappings of gay men, meaning, a fixation on self image and the pursuit of sexual or romantic partners.

“In this town, being 60, I’m chicken,” says one. Several of them are battling the aging process mightily with trips to the gym and a regimen of steroids (“All the best looking guys have HIV,” one of the men advises), all while the Palm Springs gay clothing stores mock them with windows filled with slender mannequins, dressed in tiny and unforgiving speedos.

More than one of them debates whether or not they would have reached their current level of spirituality, of self love, if they had not come face to face with their own mortality so young. “I don’t know if my life would have such richness if I wasn’t positive,” one of them admits.

The real star of the film may be Austin Ahlborg’s sumptuous cinematography, which makes the most of the desert landscape, often contrasting the men’s flesh and blood with endless vistas of withered brush and rock.

Throughout the city of Palm Springs are hundreds of acres of modern, silently whirling windmills. The film focuses on them like a fetish, their propellers turning round and round, and the more Desert Migration returns to these monuments the more they appear to be clocks, ticking away, time always turning, slowing for no one. The image repeats itself, in shots of rotating ceiling fans and mechanical sculptures turning this way and that. Time is always moving, and it is unstoppable. Tick Tock.

DM Windmill 2 Still

There is so much in Desert Migration that will be familiar to gay men of a certain age, from the brutal to the romantic. Living life in five year increments, the sudden loss of friends, the confusion, the great love affairs cut short, the lives hijacked by drug addiction after having survived AIDS. There is comfort in identifying with these men, for those who need to, even if the film limits itself to their shared calamity.

After more than an hour of bleak pronouncements – and exactly one shot of someone laughing in the entire film – it becomes clear that filmmaker Cardone is almost exclusively fixated on the tragic aspects of these men’s stories.

It’s easy, maybe even lazy, to reduce AIDS survivors to their profound loss and a struggle for meaning in their later years (which, come to think of it, is a lifelong riddle everyone must contend with, after all).

Where is the joy? A brief dinner party suggests the good humor these men surely must incorporate into their lives, but otherwise filmmaker Cardone sticks to his theme of isolation and distress. “I just think that I’m very tired,” one of the men says, after unsuccessful attempts at connection and romance. “I just don’t know how much longer I even want to fight.”

“The optimistic ones survive,” one of the more privileged men offers, as night descends and he lowers the drapes of his condo, finely appointed with a leather sofa and a gleaming Judy Garland movie poster. Another subject begins the evening by welcoming a sex partner to warm up his sling. Optimism and escapism have their utilities.

Another man takes comfort in his own loneliness and solitude. “You’re a lot more free when you don’t believe much and you don’t have any hope,” he says, in an existential moment that might depress Sartre. “If you’re holding on to hope, then you’ve still got something in the way of enjoying what is.”

After all this, I wished to God that one of these guys was shown performing in musical theater or binge watching RuPaul’s Drag Race.

The film draws to a close in the darkness of the desert, as our day with these men ends. Throughout the mountain passes surrounding Palm Springs, out there in the dark, those windmills are surely still twirling.

They continue to spin, marking time, without regard for the riddles of life or the trials of gay men.

Mark

(Visit the Desert Migration site for information on film festival screenings in your area, or for news about the DVD release.)

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The Comfort of Blaming Other People for New HIV Cases

Wednesday, April 27th, 2016

He is blaming or firing someone.

The college student had real concern in his eyes when he asked me a question during a recent presentation at American University. “Isn’t it true,” he asked, “that the HIV epidemic continues because people who know they are positive keep infecting other people?”

It is a question I have heard before, in one way or another, and it always makes me cringe. Not only does it thrust all culpability onto those living with HIV, it also promotes a narrative that being infected with HIV chemically changes our moral fiber and transforms us into abusive monsters. It is the kind of characterization that is driving HIV criminalization laws and prosecutions, which are jailing people with HIV for the offense of having sex at all, even when we protect our partners.

“That is simply wrong,” I responded to the student. “In fact, the largest amount of new infections is due to people who don’t know they are positive, who are operating on outdated HIV test results, or who haven’t tested at all. They are having sex while the HIV virus is raging in their bodies. They are the more dangerous group.”

There are few things more satisfying than projecting blame onto other people, especially when you can sling it across the chasm that exists between those who of us who actually know we are HIV positive and those who do not. There is such comfort in pointing out that nope, it isn’t me, it’s that guy over there.

And shouldn’t people know that those who haven’t bothered to get tested lately are responsible for more infections? It’s a message advocates like myself have been delivering for years in an attempt to increase HIV testing and, consciously or not, subtly redirect blame.

Except that my answer to that college student isn’t true. Not anymore. New epidemiological facts, first brought to my attention last month by Paul Kawata of the National Minority AIDS Council (NMAC), completely discredit my long-held beliefs.

More new HIV infections are now caused by people who know they are positive. That’s the truth. And by a wide margin.

Here comes two brief paragraphs of wonky epidemiology. Hang in there. It’s very interesting.

A December, 2015, article in the New England Journal of Medicine (NEJM) using data from 2012 shows that a whopping 69% of new infections can be attributed to people who have already tested positive for HIV but are not in care or not receiving adequate care, and only 23% of new HIV infections are due to those who do not know they are positive (a small, single-digit percentage of new infections are attributable to people who are in regular care but are not necessarily undetectable).

NEJM Slide 2012 data

This, in contrast to a study published earlier last year in the Journal of the American Medical Association (JAMA) but using data from 2009, which states that people who know they are positive are less likely to transmit HIV than those who don’t know they are positive.

So, what happened between 2009 and 2012 that produced such conflicting results? Dr. Jonathan Mermin, the Director of the National Center for HIV/AIDS at the Centers for Disease Control (CDC), happens to have co-authored both studies in question.

Dr. Jonathan Mermin of the CDC

Dr. Jonathan Mermin of the CDC

“Saying the epidemic is largely driven by people who think they are negative is no longer a true statement,” Dr. Mermin told me. “And this is what has changed over time: The United States is one of the countries where a high percentage of people know their status. We’re up to 87%.”

In other words, there is now a much larger pool of people who know they are positive, due to the success of HIV testing efforts. And from this larger pool comes the vast majority of new HIV infections.

“The reason these figures have changed,” said Dr. Mermin, “is because we know more of the people who are positive. The challenge now is to get those people into regular care.”

Since only 30% of those who know they are positive are virally suppressed – a number that has nevertheless grown in recent years – Dr. Mermin strongly believes that the biggest push both clinically and in terms of CDC budget dollars should be devoted to getting people with HIV into care, on treatment, and rendered undetectable (also known as “treatment as prevention”).

“Treatment and prevention are now intertwined” said Dr. Mermin. “You can’t think of one without the other. We have encouraged our grantees to think about that continuum of care, to think about getting people into care, anti-retroviral therapy, while continuing to help people know the facts about transmission. That comprehensive package has been found to be effective.”

The clear evidence after all of this number crunching makes my longstanding habit of assigning blame to “those other people” not only ignorant but ludicrous. There are plenty of HIV infections to go around. This isn’t a contest for the title of Most Likely to Infect Someone.

Funny how my attitude becomes more generous, when it is now people who know they have HIV, like me, who are doing the most infecting.

We also can’t ignore another important statistic. Only 30% of the HIV positive people in the United States are undetectable, which puts an asterisk on another popular message among HIV advocates: that it is safer to have sex with a person who is positive, in treatment, and undetectable.

That is literally true, yes, but it includes a big mouthful of important qualifiers – not all of which can be properly vetted in every risky situation. Hopeful assumptions are not a prevention strategy.

While I applaud the gay dating apps that have added profile options for HIV status that include “undetectable” and “PrEP,” the truth behind these personal factoids should be weighed at least as discerningly as facts presented about, say, their age. Or about their other personal attributes. Ahem.

The growing list of status labels also fractures our community even further, whittling us into subsets within subsets. Suddenly, the new personal failure isn’t simply being HIV positive, but now includes not being undetectable. This doesn’t begin to address the many social determinants that block people who know they are positive from achieving viral suppression: lack of access and financial resources, HIV stigma, an unwillingness to take medications, having failed treatment regimens, or simply being without the wherewithal to locate an HIV clinic or physician and jump through the hoops required to enter the system.

All of the finger pointing in which I have admittedly participated is a useless exercise. By focusing on the relative safety of someone else we renounce our own responsibility. That is why the arrival of pre-exposure prophylaxis changes so much of the game. PrEP puts HIV negative people in charge of their own protection, without having to make judgments or assumptions about others.

But, until PrEP access and education better reaches communities most at risk, many people will still look outward, relying on guesswork and presumptions about who is a danger to them and who is not. As I have recently learned, sometimes we get it very wrong.

It took surprising new research on current HIV infection rates to get me off my high horse and take me back to basics. We’re all in this together. Negative people at risk should maintain HIV testing. Those who test positive should investigate treatment. Barriers should be removed.

And of course, taking action to protect ourselves is our responsibility. It is ultimately ours, and ours alone.

Mark

And, under the banner of “Why Mark Avoids Writing Research-Based Essays,” this counterpoint from the always insightful Londoner Gus Cairns, editor of AIDSmap. Gus references an AIDSmap article, “Model suggests there are fewer people with HIV in the US than thought, and more of them on therapy,” which reads in part:

A study comparing recorded diagnoses of HIV with subsequent records of viral load and CD4 tests suggests that the number of people with HIV in the US could have been overestimated by as much as 45% – and the proportion who are on antiretroviral therapy (ART) with undetectable viral loads could have been underestimated by as much as 50%. There could be a few as 820,000 people with HIV in the US compared with the normally accepted figure of 1.2 million – and up to 55% of those could be on ART and virally suppressed, compared with the most commonly quoted figure of 30%.

PLUS…

HIV Not Crime 2016 logoThe first-ever HIV IS NOT A CRIME conference held last year in Grinnell, Iowa, was the most inspiring conference I have attended in years. Advocates of every stripe were laser-focused on what I consider to be the defining moral issue of our time in the HIV arena.

And now, the second conference is about to be held, this time as the “HIV Is Not A Crime Training Academy,” on May 17-20 in Huntsville, Alabama. You gotta love how these committed advocates choose locations to meet where criminalization is either being successfully reformed (Iowa) or where prosecutions continue (the south). I recommend you attend if you possibly can, or at least follow the event’s Facebook page or the #HIVisNotACrime hashtag on social media. If you would like to promote criminalization reform, check out their handy social media toolkit for sample tweets and fabulous artwork.

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Mr Gay World Entry Gets Personal on PrEP and Testing Poz

Monday, April 18th, 2016

When Sadiq Ali heard about a clinical trial for pre-exposure prophylaxis (PrEP) happening in the United Kingdom in 2013, the athletic 26-year old hesitated. He worried about what starting PrEP might say to people about his sexual behavior. The stigma he associated with being on the prevention pill was just too much for him.

Sadiq Ali photo“I was ashamed to even be offered this thing, even though I barely knew what it was,” the Londoner says now. “I thought that only highly promiscuous and risky sex practitioners would take this. I went through this process of ‘slut shaming’ myself. I was still very naïve at this point.”

So, Sadiq waited a few more months, had second thoughts, and decided to enroll in the PrEP study after all. Unfortunately, fate had dealt him a crushing blow.

Between the time Sadiq heard about the study and before he actually began taking PrEP, he was infected with HIV. It occurred literally days before he started taking the pill. His first HIV test during the study, in January of 2014, revealed the infection.

“I thought if I took PrEP it would make me all the things I didn’t think were me. Things that I didn’t want to be,” he says, pointing to the promiscuity about which many gay men taking PrEP are accused. “But instead, not taking it resulted in me contracting HIV.”

The irony of Sadiq’s tragic timing forged an advocate who is fighting both HIV stigma and for the adoption of PrEP in the United Kingdom (it is an advocacy issue that was further ignited when the UK National Health Services took action that has delayed the approval of Truvada as PrEP, perhaps for years).

This past year, Sadiq won the title of Mr. Gay Great Britain, and his advocacy platform is something he now understands all too well: HIV stigma among gay men, and why PrEP is such an important new prevention tool.

In his emotional and inspiring video as a contestant for Mr Gay World – the finals are happening this week on the island of Malta — Sadiq courageously shares his story of deciding to join the PrEP trial too late, and what the experience has taught him about internalized stigma.

“Something was lifted from my shoulders when I filmed the video,” Sadiq says. “I can now be in a position to educate.”

British PrEP advocate and gay internet personality Greg Owen understands just how frustrating the unfortunate timing of Sadiq’s HIV diagnosis was. Greg, too, was infected with HIV just as he was to begin participating in a PrEP trial. The two men – one a longtime advocate, the other a newly minted one – filmed an interview for #GregChats that is as good-natured as it is emotional.

As for Sadiq’s week ahead in Malta, he intends to showcase both his advocacy and his eye-popping skill as a gymnast and circus performer. Anyone in the world can vote for Sadiq right here.

“The community support I’m receiving behind me is swelling up” he says. “I am more motivated than I have ever been and I feel proud. I know that I am doing the right thing. I want to tell people that there is a way to protect yourself, and there is no need to judge yourself for that. To take your status into your own hands is something empowering.”

He also has no preconceived expectations about his chances to take home the title of Mr. Gay World. Winning is beside the point, Sadiq believes.

“Of course,” he says, “I have already won.”

Mark

(Photo credit: Josh Auke. Videos produced by Nuno Lopes.)

 

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